Hearing the Voice of the Child with communication difficulties

  • Research type

    Research Study

  • Full title

    Title: Hearing the voice of children and young people with learning disabilities in the ‎Education Health Care Plan (EHCP) ‎

  • IRAS ID

    201866

  • Contact name

    Sara Pearlman

  • Contact email

    sara.pearlman@nhs.net

  • Sponsor organisation

    SEND project reforms board

  • Duration of Study in the UK

    0 years, 6 months, 2 days

  • Research summary

    The SEND reforms (2014) require that the “voice” of young people with disabilities and ‎special educational needs is elicited and taken account of in decisions about planning ‎for their current and future education and health care needs. Yet, there is a sizeable ‎sub-group of young people, who have limited language or do not use recognisable ‎speech to communicate. There is currently no evidence-based procedure to elicit the ‎opinions of children with moderate to severe, or profound and multiple learning ‎disability. Recent discussions have focused on this topic at the London and South East ‎CY-IAPT and CORC conferences.‎
    The SEND reform project board in Brent has highlighted a gap in the delivery of the ‎ECHP, in that we do not have a standardised method of obtaining the ‎views/aspirations of young people with moderate, severe and profound learning ‎disability who have limited communication skills. The Board have approached Sara ‎Pearlman, Clinical Psychologist and CAMHS representative to the Board, to ask her to ‎develop an appropriate, evidence-based method. The proposed method is outlined ‎below, together with the funding implications.‎
    Research questions:‎
    ‎1.‎ Can we develop a semi-structured interview with questions that are pertinent ‎to the lives of this cohort, to elicit relevant responses that inform the ECHP?‎
    ‎2. ‎ Can we put together and use appropriate communication aids for assisting the ‎responses to the above interview?‎
    ‎3.‎ Using video clip analysis, can we come to an agreement as to the meaning of ‎the child’s responses and gain statistically significant inter-rater reliability ‎between those who know the child well?‎

  • REC name

    Yorkshire & The Humber - Sheffield Research Ethics Committee

  • REC reference

    16/YH/0264

  • Date of REC Opinion

    12 Jul 2016

  • REC opinion

    Further Information Favourable Opinion